Chronic Pain members - Welcome, please introduce yourself

I'm Heather and I have severe, chronic pain. I have gastroparesis, fibromyalgia, grade 4 osteoarthritis to my spine, and both knees as well as avascular necrosis of (that I know of) my hips and knees. I've been in pain for so long that I don't know how long I have had it if that makes sense. Because of the GI issues, it's a struggle to find good pain management that doesn't make that worse-but any med I take is likely to some degree, make the gastroparesis worse. My palliative care provider honestly tells me "it's all a trade-off for you." and how my pain is managed depends on what I am okay to live with. That's my chronic pain.

As for me, I like to live my life to the fullest-I stay as active as I can (which right now, is very limited), and I am working full-time as a nurse (I do nights so I can be a LITTLE less active). I did a dumb thing and worked a second shift and paid a heavy price-the next two days I was almost immoble due to the pain. And yes, I take pain meds-you bet I do! I have also had pain bring me to the point of wanting to take my life. All it seems to do is get worse. And yes, I got myself some help and am on a better track.

I really feel my struggles with chronic pain help me to be a better nurse. When a patient says "I'm in pain," no worries, I got you! I utilize meds for patients as ordered and when appropriate but I am also up on the non-medication ways to try to help with pain. And I pass that along to my patients. Though if one is being honest with themselves, we all fall short-sometimes it can't be helped. I strive to keep my patients as comfortable as I can and I will proudly say I once was written up for getting a hospice patient pain meds. No regrets there, I did my job-as a nurse and a human being. Most of my colleages will tell you I am a pretty compassionate person. I think the chronic pain is a contributing factor.

That being said, I am in need of a total knee replacement on both sides and lack the money to live on while I am recovering. So I am raising money and socking it away as much as I can-I'm tired of being in pain all the time.

Pain doesn't define me. My life is more than that.

Hello! My name is Brenda, and I am from the DC area. I have been dealing with chronic pain since about 1994, though I was not diagnosed with Rheumatoid Arthritis until 2009. I have had knee pain since I was a teenager. My left kneecap is out of place. I also have osteoarthritis, fibromyalgia, several associated syndromes, and fight with depression. I look forward to learning new coping strategies in this group and sharing anything that works for me.

Hi. My name is CB VIAU (pronounced VIEW). I live in a small community in the USA with limited health care, and therefore, I practically live on Google and Amazon for utilizing research methodologies pertaining to healthcare. I've been at my wits end with chronic pain and decided to look for free online pain forums, and voila, through the grace of God, I found Mayo.

Ten years ago, I was treated for anal cancer, and unfortunately, the nerve damage has grown unbearable over the past 5 years, but especially these past several months. The foot neuropathy started about two years ago and that's when I was diagnosed with lumbar radiculopathy (referred pain from my back to my feet). I suffer with radiation proctitis, lumbar multilevel degenerative disc disease and a fractured sacrum, all brought on by chemo and radiation. I am not diabetic, but I could stand losing 25 pounds. Before treatment for cancer, I was very active both mentally and physically. But in the past several months I feel like I am losing myself. I can't fix me anymore and that is my worst fear. My energy has taken a nosedive, too, and I can't pull myself out of it. I'm angry because I'm not ready to give in and allow the many stages of pain to control me. I need a strong pain killer but good luck in getting it.

I have been a naturopath for years. If something in my body seemed out of whack, I would find a resolve using supplements, exercise and research. You could say I'm a “health-fad nut”. I'm always looking for something natural to help me carry on as a centenarian in training. (not a joke). Recently my PA mentioned Alpha Lipoic Acid to me. She also mentioned non-dairy and plant-based foods to help with inflammation in my body and to control cholesterol levels. I'm adhering to all three modalities. And next week I will have blood work done again. Hope it’s good.

Naturally I did my research on Alpha Lipoic Acid and my question is, how many mg of R-ALA stabilized should I take daily? For seven days I've been taking 100mg. But yesterday, I started taking 300mg daily. I'm not sure if I should go with 300 or 600mg. One of my PT’s takes 240mg. MY PA takes ALA, too, but I didn’t think to ask her how much. But I will ask her next week.

Once again, I am using myself as a human guinea pig. And I've been doing that for years. I don't know how long it takes for this product to ease the nerve pain. I just know that I am not feeling an improvement yet. My greatest desire is to be able to walk without pain. My hip joints lock up on me. My back hurts so bad I feel the need to sit. Shopping is becoming a real problem. I find myself pulling out my roll-on pain gel stick and rolling in over my back and parts of my leg, in public (with discretion). Walking to the dumpster where I live, pulling a light basket, is a problem. It's just a few doors from me, but I feel the need to sit because of the pain in my right hip joint area and sacrum. I have no life and it's really getting to me. I know this is a long-winded message, but I need to talk. I need to vent. Thank you to those who are listening and feeling my pain. I reciprocate and feel yours, too. Always. Hugs for relief and personal freedom. CB

I have chronic pain: fibromyalgia and osteoarthritis including many bone spurs. I take Tylenol and duloxetine. This condition prevents me from working as many hours as I could as a substitute teacher. I am a 73 year old retired high school science teacher. So frustrating!

Celia Holder
Live with chronic pain. Muscles and
joints. Foggy head late in the day. I've been like this since early 90's . Lots of meds that keep the pain subdued.

Hello, I’m a new member here looking for answers like all of you. I’m 77 years old and have had nerve pain in both legs for past 10 years. I’ve tried several meds. I’ve been to Mayo clinic in Rochester for a three day evaluation but came up empty. I’m not diabetic. The only med that helps is gabapentin. I take 3600mg per day. I’ve even had a spinal stimulator surgically implanted in my back. It helped for awhile then not.
I’m currently looking into conolidine. I’ve ordered some products from GDR labs and also some other products from different sources.
At this point in my life I’m willing to try anything within reason but I don’t want to make things worse.
I would be very happy to hear about any new developments. I also heard the Mayo Clinic is researching a conolidine type product. Anything on that would be interesting.

I’m feeling so sad for you. You have been through too much. Shame on the medical community. I have Chronic Pain Syndrome. However, I feel there is more to the diagnosis because my muscles are wasting away. I’ve had severe pain but now I have to just rest and use my Lidocaine patches or cream. I’m on meds too. I’ll light a candle for you at church. Hoping you get relief. Is the Mayo Clinic an option?

Hi my name is Marilyn Maroulakos.
I have had neuropathy which started 12 yrs ago in both feet and progressed upwards to my right hand and my lips and cheeks of my face.I cannot feel my feet they are so numb, and my balance is nonexistent.
My feet hurt so badly at times,that I can’t bear to stand on them.
I’m on Tramadol from my pain management doc, and it doesn’t take it away,but does take the edge off.
I also use Salon pas pain patches on the edge of both feet,which is where they hurt and are black and blue.
I have tried all kinds of shoes from New Balance and Ortho Feet.
They feel ok at first,but by the end of the day,I can’t walk on them anymore.
I was diagnosed few years ago with CIDP, and had months of IVIG infusions with no relief.
I’m hoping to start Rituxan infusions soon when I move to Arizona.
I am going to a new neurologist out there,who specializes in CIDP.
Hopefully he can help me,because the other 6 neurologists that I went to weren’t able to.
They just told me I was very unique

I have had 3 back surgeries. I have lots of lesd in back. I can walk but very slow and not very far. The last surgery about did me in. I have chronic pain daily.

I can barely stand long enough to brush my teeth. Walking is becoming unbearable